Supporting caregivers at end-of-life
Caring for a friend or family member at the end-of-life can have many different faces – a woman struggling to manage a career and family while caring for a husband with cancer; a senior citizen with health problems caring for a spouse with Alzheimer’s at home; a single mother trying to support a dying sibling who lives thousands of kilometers away.
“As the aging population in Canada continues to increase, so will our need for informal or family caregivers,” says Sharon Baxter, Executive Director of the Canadian Hospice Palliative Care Association (CHPCA), “We need to work together to better support those who care for those with a chronic or life limiting illness.” According to the CHPCA, more than 259,000 Canadians die each year, and most in old age. With the aging of our population, by 2026, the number of Canadians dying each year will increase by 40 per cent to 330,000. Each of those deaths affects, on average, five other people – mainly family and loved ones who care for others.
The question is, how do caregivers get the support they need? What tools and resources are out there currently to assist caregivers with decision making at end-of-life?
A 2007 Health Care in Canada study showed that, 23 per cent of Canadians said that they had cared for a family member or close friend with a serious health problem in the last 12 months. Adverse effects on this group of people included: using personal savings to survive (41%) and missing one or more months of work (22%).
Canadians often do not realize the financial impact caregiving has on families, and are often unaware of the assistance programs offered by certain employers. If you are currently caring for a friend or family caregiver with a terminal illness, ask your employer whether they offer any Compassionate Care Benefits. As a leading-edge global company, GlaxoSmithKline includes in their employee benefit package the option of up to 13 weeks paid leave to employees who require time away from work to care for a dying family member.
If your company does not offer these kinds of benefits, the Federal Government offers up to six weeks of Compassionate Care Benefits for those caring for a critically ill friend or family member. For more information on the Compassionate Care Benefit please go to www.servicecanada.gc.ca. If you are a professional who would like to learn more about discussing the Compassionate Care Benefit with patients, please go to www.chpca.net.
Another way to ease the burden of caregiving at the end-of-life is through Advance Care Planning. Advance Care Planning is a time for you to reflect on your values and wishes, and to let others know your future health and personal care preferences in the event that you become incapable of communicating for yourself.
A 2008 study found that the absence of Advance Care Planning or end of life care discussions was associated not only with worse patients’ ratings of quality of life at the end, but also increased anxiety and depression in caregivers. An Advance Care Plan leaves fewer decisions to family caregivers, significantly lessening the stress already faced by caring for a person with a critical illness.
To learn more about Advance Care Planning and the Speak Up: Start the conversation about end-of-life care campaign, please go to www.advancecareplanning.ca.
For those currently caring for a loved with a chronic or life limiting illness, there are many resources out there to help during this difficult time:
The Canadian Caregiver Coalition is a diverse group of national and provincial organizations from across Canada that works collaboratively to represent and promote the needs and interests of family caregivers with all levels of government, and the community – www.ccc-ccan.ca.
The Canadian Home Care Association promotes excellence in home care through leadership, awareness and knowledge to shape strategic directions. They believe in accessible, responsive home care and community supports which enable people to stay in their homes with safety, dignity and quality of life – www.cdnhomecare.ca
Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators. – www.virtualhospice.ca
The Canadian Hospice Palliative Care Association distributes several free resources for caregivers. These resources include: Living Lessons® A Guide for Caregivers, A Caregivers Guide: A handbook about end-of-life care, Advance Care Planning Workbook, and much more. To order resources from the Canadian Hospice Palliative Care Association please go to www.market-marche.chpca.net. The Canadian Hospice Palliative Care Association also has many events and online resources for caregivers at www.chpca.net.